Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Guess my question is the same as yours. I have been on Mio for 9 mo's 200 mg a day 7 days a wk. My rhumey says to stay on it the rest of my life. however I talked to a pharmasist and he recommended maybe to take a break from it for a month every 6 mo's to give the body a rest. sounded like a good idea to me. but now I'm just wondering what is the best advise to take. I have Sd . I am on celebrex, procardia, priliasex, celexa, also. Take tons of herbal supplements & drink ahla vera seems to help boose my fatigue,. Sandy, Liz, anyone what would u do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Dear Lois, I hear your concern. You read here this week where Dr. Brown says you can stay off the AP for only up to four weeks before going backwards. This is not leaving you much of a "window" here at the early stage of your antibiotic protocol in trying to get your disease into remission before sliding the other way. And you are dealing with a deadly disease - which you already know. You obviously have a very knowledgeable and kind pharmacist who has taken a personal interest in you. That means so much to those on the net here who have a jerk for a pharmacist and you are sort of a "take a number" customer. That said, were I you, and I had only been on the minocin for nine months which is very, very short time, I would not be looking to take a break, particularly for a month which is the window to sliding backwards, but instead persevere ahead. Maybe after a couple of years and seeing MUCH progress would I take the break. Just not yet. I am not you though, and it is very easy to give advise. But on this particular subject, personally, I intend to take no breaks that I have to at this time. In fact, Dr. Sinnott upped my iv's - the Minocin dosage as remained the same, 200 mg. MWF, and I have such faith in him, so will persevere on. On a positive note, you must be doing really well to consider this! Have your symptoms diseappeared? What are you left with in symptoms? How about brain fog and fatigue? My gut problem has been pretty much resolved. Boy, I cannot say enough for the knowledge of Adlard and Ethel Snooks. That was just a taste of what Chris's daughter, Janene, went through and I sure don't want to go there again! How I love and depend on this family here. It took so little to come out of that but what if I had not had everyone here? Pretty scarey! On that note, I love and appreciate each and every one of you and have a HEALTHY, BLESSED NEW YEAR! Going forward in the new year into wellness with Love, Lois and Bud wrote: Guess my question is the same as yours. I have been on Mio for 9 mo's 200 mg a day 7 days a wk. My rhumey says to stay on it the rest of my life. however I talked to a pharmasist and he recommended maybe to take a break from it for a month every 6 mo's to give the body a rest. sounded like a good idea to me. but now I'm just wondering what is the best advise to take. I have Sd . I am on celebrex, procardia, priliasex, celexa, also. Take tons of herbal supplements & drink ahla vera seems to help boose my fatigue,.Sandy, Liz, anyone what would u do? To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 I have the same issue--200 mg daily, started much lower, now on mino for a total of one year but my rhemy said to treat the mino like other arthritis drugs (DMARDs) -- ie, when you're doing better (ie. decreased inflammation and symptomatology) cut back. But I'm afraid too! What has everyone else done? G. rheumatic Re: Roni Guess my question is the same as yours. I have been on Mio for 9 mo's 200 mg a day 7 days a wk. My rhumey says to stay on it the rest of my life. however I talked to a pharmasist and he recommended maybe to take a break from it for a month every 6 mo's to give the body a rest. sounded like a good idea to me. but now I'm just wondering what is the best advise to take. I have Sd . I am on celebrex, procardia, priliasex, celexa, also. Take tons of herbal supplements & drink ahla vera seems to help boose my fatigue,. Sandy, Liz, anyone what would u do?To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 I and a lot of other people have been on Minocin MWF only. I have been on AP 31/2 years and I am not ever going to stop completely. All my labs are normal and I feel good. I stilll do the IV every other week and MWF I now do tetracycline. I don't think you can ever kill all the mycos. cooky seg14 wrote: I have the same issue--200 mg daily, started much lower, now on mino for a total of one year but my rhemy said to treat the mino like other arthritis drugs (DMARDs) -- ie, when you're doing better (ie. decreased inflammation and symptomatology) cut back. But I'm afraid too! What has everyone else done? G. rheumatic Re: Roni Guess my question is the same as yours. I have been on Mio for 9 mo's 200 mg a day 7 days a wk. My rhumey says to stay on it the rest of my life. however I talked to a pharmasist and he recommended maybe to take a break from it for a month every 6 mo's to give the body a rest. sounded like a good idea to me. but now I'm just wondering what is the best advise to take. I have Sd . I am on celebrex, procardia, priliasex, celexa, also. Take tons of herbal supplements & drink ahla vera seems to help boose my fatigue,.Sandy, Liz, anyone what would u do? To unsubscribe, email: rheumatic-unsubscribeegroups To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 at this point I am completely shut out of the situation. Everyone including son thinks I am crazy to suggest iodine b4 surgery! Everyone is focusing on defective heart valve and not his overall health, which IMO is really poor. He has had so many hypo symptoms for years but based on TSH he has no thyroid probs. That's what happened to me for 30 years. Everyone in my family has mental health issues, and for years he has had the moodiness--sweet one minute and irrational and fighting over nothing the next. I am never sure if I will be talking to the nice Colin or the crazy one. So I think if he lives through this he will have a fixed valve but be much less healthy. Mental illness and birth defects are symptoms of iodine deficiency for me. At this point I just have to give up and let events unfold and accept the outcome. I just saw a movie called 12 Monkeys which referred to Cassandra in Greek myth. She was condemned to tell the truth/tell the future and never be believed. I am feeling like that. Thanks for your thoughts, I appreciate it. Gracia Gracia, I certainly can understand your trepidation about your son's surgery, but since it is going to actually happen, you would do better for your son, IMHO, to be positive and supportive of the procedures going on. I hope you take this in the way it was given. As a mother, with two sons of my own, I know how apprehensive I would be if this was going on with one of them so far away. I hope you will feel a little bit better about all this, and I wish your son a full and speedy recovery. Roni --- Gracia <circe@...> wrote: > > thanks. I think the stress is going to push him > over the edge though, I know his adrenals aren't > adequate. > MVP improves or disappears on thyroid meds. > Gracia > > Gracia, > > You wrote: > > > > my son age 34 is having heart valve replacement > surgery next week in > > Berlin Germany. He has sooooo many symptoms of > hypothyroid, low adrenals > > with a " normal " TSH. > > no one will pay attention to me about hypo > issues, they all think I am > > crazy, and I am fearing the worst. > > I would suggest waiting until the valve surgery is > completed. If the > hypoT conditions continue, then press the issue. > The doctors should be > more amenable if it interferes with recovery. A > bad valve is not > diagnosed on the basis of metabolic deficiencies, > but it can certainly > cause or aggravate them. Tissue needs oxygen as > well as FT3. Lots of > conditions can mimic hypoT. This is certainly one > of them. > > BTW, my son had surgery on his stenosed pulmonary > valve when he was ten > days old. At the time the procedure was so new, > the two previous infants > to try it had died. They called Mike the " miracle > baby. " He's 32 now, > and the procedure has become routine. We are both > familiar with medical > imaging technology, since we had a front row seat > as it developed. > > I am sure they have excellent surgeons in Berlin, > maybe not as many as > in Boston, but you only need one. > > Chuck > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 It's very frustrating and worrying when our kids don't listen to us, especially about something related to their own safety. I also experiencee these things with my own sons. I am forced to accept the fact that I can't make them do what they should, only watch what they do that they want, and listen when they tell me how it went wrong. I hope, though, that your son's operation will go right for him, and then maybe you could suggest to him to have his thyroid and adrenals tested, just to make you feel better. Sometimes they will do things to humor you (me) (a mother). It's very hard for a conscientious mom who still cares about and tries to protect a grown son who won't listen. Roni --- Gracia <circe@...> wrote: > > at this point I am completely shut out of the > situation. Everyone including son thinks I am crazy > to suggest iodine b4 surgery! Everyone is focusing > on defective heart valve and not his overall health, > which IMO is really poor. He has had so many hypo > symptoms for years but based on TSH he has no > thyroid probs. That's what happened to me for 30 > years. > Everyone in my family has mental health issues, > and for years he has had the moodiness--sweet one > minute and irrational and fighting over nothing the > next. I am never sure if I will be talking to the > nice Colin or the crazy one. So I think if he > lives through this he will have a fixed valve but be > much less healthy. > Mental illness and birth defects are symptoms of > iodine deficiency for me. > At this point I just have to give up and let > events unfold and accept the outcome. > I just saw a movie called 12 Monkeys which > referred to Cassandra in Greek myth. She was > condemned to tell the truth/tell the future and > never be believed. I am feeling like that. > Thanks for your thoughts, I appreciate it. > Gracia > > Gracia, > > I certainly can understand your trepidation about > your > son's surgery, but since it is going to actually > happen, you would do better for your son, IMHO, to > be > positive and supportive of the procedures going > on. > I hope you take this in the way it was given. As a > mother, with two sons of my own, I know how > apprehensive I would be if this was going on with > one > of them so far away. > > I hope you will feel a little bit better about all > this, and I wish your son a full and speedy > recovery. > > Roni > > --- Gracia <circe@...> wrote: > > > > > thanks. I think the stress is going to push him > > over the edge though, I know his adrenals aren't > > adequate. > > MVP improves or disappears on thyroid meds. > > Gracia > > > > Gracia, > > > > You wrote: > > > > > > my son age 34 is having heart valve > replacement > > surgery next week in > > > Berlin Germany. He has sooooo many symptoms of > > hypothyroid, low adrenals > > > with a " normal " TSH. > > > no one will pay attention to me about hypo > > issues, they all think I am > > > crazy, and I am fearing the worst. > > > > I would suggest waiting until the valve surgery > is > > completed. If the > > hypoT conditions continue, then press the issue. > > The doctors should be > > more amenable if it interferes with recovery. A > > bad valve is not > > diagnosed on the basis of metabolic > deficiencies, > > but it can certainly > > cause or aggravate them. Tissue needs oxygen as > > well as FT3. Lots of > > conditions can mimic hypoT. This is certainly > one > > of them. > > > > BTW, my son had surgery on his stenosed > pulmonary > > valve when he was ten > > days old. At the time the procedure was so new, > > the two previous infants > > to try it had died. They called Mike the > " miracle > > baby. " He's 32 now, > > and the procedure has become routine. We are > both > > familiar with medical > > imaging technology, since we had a front row > seat > > as it developed. > > > > I am sure they have excellent surgeons in > Berlin, > > maybe not as many as > > in Boston, but you only need one. > > > > Chuck > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 OMG, I think I must be Cassandra's reincarnation, because that sure sounds like the story of my life. I know how you feel. I implore you, Gracia, let it go for now, because the aggravation will make you feel physically worse, and you surely don't need that. Roni --- Gracia <circe@...> wrote: > > at this point I am completely shut out of the > situation. Everyone including son thinks I am crazy > to suggest iodine b4 surgery! Everyone is focusing > on defective heart valve and not his overall health, > which IMO is really poor. He has had so many hypo > symptoms for years but based on TSH he has no > thyroid probs. That's what happened to me for 30 > years. > Everyone in my family has mental health issues, > and for years he has had the moodiness--sweet one > minute and irrational and fighting over nothing the > next. I am never sure if I will be talking to the > nice Colin or the crazy one. So I think if he > lives through this he will have a fixed valve but be > much less healthy. > Mental illness and birth defects are symptoms of > iodine deficiency for me. > At this point I just have to give up and let > events unfold and accept the outcome. > I just saw a movie called 12 Monkeys which > referred to Cassandra in Greek myth. She was > condemned to tell the truth/tell the future and > never be believed. I am feeling like that. > Thanks for your thoughts, I appreciate it. > Gracia > > Gracia, > > I certainly can understand your trepidation about > your > son's surgery, but since it is going to actually > happen, you would do better for your son, IMHO, to > be > positive and supportive of the procedures going > on. > I hope you take this in the way it was given. As a > mother, with two sons of my own, I know how > apprehensive I would be if this was going on with > one > of them so far away. > > I hope you will feel a little bit better about all > this, and I wish your son a full and speedy > recovery. > > Roni > > --- Gracia <circe@...> wrote: > > > > > thanks. I think the stress is going to push him > > over the edge though, I know his adrenals aren't > > adequate. > > MVP improves or disappears on thyroid meds. > > Gracia > > > > Gracia, > > > > You wrote: > > > > > > my son age 34 is having heart valve > replacement > > surgery next week in > > > Berlin Germany. He has sooooo many symptoms of > > hypothyroid, low adrenals > > > with a " normal " TSH. > > > no one will pay attention to me about hypo > > issues, they all think I am > > > crazy, and I am fearing the worst. > > > > I would suggest waiting until the valve surgery > is > > completed. If the > > hypoT conditions continue, then press the issue. > > The doctors should be > > more amenable if it interferes with recovery. A > > bad valve is not > > diagnosed on the basis of metabolic > deficiencies, > > but it can certainly > > cause or aggravate them. Tissue needs oxygen as > > well as FT3. Lots of > > conditions can mimic hypoT. This is certainly > one > > of them. > > > > BTW, my son had surgery on his stenosed > pulmonary > > valve when he was ten > > days old. At the time the procedure was so new, > > the two previous infants > > to try it had died. They called Mike the > " miracle > > baby. " He's 32 now, > > and the procedure has become routine. We are > both > > familiar with medical > > imaging technology, since we had a front row > seat > > as it developed. > > > > I am sure they have excellent surgeons in > Berlin, > > maybe not as many as > > in Boston, but you only need one. > > > > Chuck > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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